Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.

Saturday, February 28, 2009

…12 moms sitting in a big circle and inside the circle 12 toddlers are picking up and throwing balls in every possible direction whilst a happy bouncy melody fills the air.

…the same circle of moms now all holding up a big, multicoloured parachute whilst the same toddlers explore underneath. Some bravely walk around, loving the feeling of their heads brushing against the cloth, others are more cautious and slowly crawl from their mom’s laps to explore this new rainbow world.

These are two moments from our music and movement class that Matt and I have been attending for the last 5 Friday mornings. Each class lasts an hour and is filled with songs and music. With each song the teacher brings out a fun item for the kids to play with – it could be balls, bean bags, windmills, silk handkerchiefs, shakers, dusters or something else exotic. She gives the moms and kids a suggested way of moving or using the item, but is really not stressed if the kid improvises and does his own thing.

I had such mixed feelings about taking Matt to this group. This year I wanted to increase Matt’s interactions with other kiddies. When a friend recommended this group it seemed like an excellent opportunity, especially as it had a strong focus on music. And if you know Matt, you know that he loves music. But on the other hand I was quite nervous of introducing Matt to a whole bunch of people who don’t know him, who may judge him or me. I was worried that he might not enjoy it or that he would be overwhelmed by all the people.

It turns out that the teacher, Theresa, has had experience with kids with special needs so she has been really sensitive to Matt’s needs. She helped me choose the best class for Matt to join. She also gave us space to introduce Matt the class and to share with the other moms about Matt’s syndrome. I decided it was better to be up front about Matt, rather than have them wondering about Matt but being too shy/polite to ask. The moms responded just as I hoped – they treat Matt just as any of the other kids, but they don’t mind asking me questions or finding out more about Matt.

Matt’s response to the group has surprised me. He has managed very well with the many people. He participates in most activities. There are some of the games that he just does not want to do. I can tell he knows what is expected and that he is choosing not to get involved. I’m happy with that – he is learning to express his will. The first song always catches him by surprise and he sits on my lap looking around quite bewildered, and not keen to get involved. After welcome song comes the parachute – which still freaks Matt out. He is happy to stand next to me and watch it, but don’t ask him to get under it. Once these two activities are out of the way, he seems to settle in and enjoy the rest of the session. He enjoys waving the handkerchief, throwing the balls, making stomping-elephant movements, clapping his hands, playing peek-a-boo with the doll, and he loves the story time at the end. This week he took brave steps to go to the teacher to fetch the item for each song – he has been too nervous to do this up until now. I loved watching him interact with her.

Matt’s not the only one who has benefitted from the group. I’ve had some moments of self discovery. I realised in the 3rd class that although I wanted this experience to be all about Matt, I was in fact bringing my own baggage into the group. I realised that subconsciously I love pleasing the teacher, getting things right, following orders and getting praise (yes - you can imagine me in my school class, sitting in the front, hand up ready to answer the question). Deep down I was finding it hard that Matt didn’t want to do something or that he wasn’t participating like the other kids. My head completely accepted that Matt would do things at his own pace, but the “young rule-following, people-pleasing school girl” in me was unhappy. I had a good prayer time with God, repented, recognised the lies that I had been believing about myself and Matt. This prayer time has resulted in greater freedom for me as I’m less concerned about the people-pleasing, and more authentically content for Matt to do his thing his way.

Theresa always ends the session by giving the kids an ink stamp on their hand – this week it was a picture of a butterfly. As Matt is obsessed with butterflies he spent most of the car trip home looking at his hand and signing the word for butterfly.

Wednesday, February 18, 2009

A while back I read blog post by an honest mom who was sharing how she was struggling with other parents who complain about things their children can do and do too much of, whilst her child may never do those things. For example, a parent saying that their child is such a chatter box that it drives them crazy, whilst this mom (and me) don’t know if our child will ever speak.

I have also had moments when other moms complain about how their little one is just 9 months and has already started walking and it has turned her life upside down, if only he would wouldn’t develop so fast. I can’t relate because I have been waiting for Matt to walk for over 2 years. Or another mom who bemoans the fact that her child just eats anything he gets his hands on – and I think about Matt who would wish to eat anything, but still gags on most foods and therefore is still mainly eating mashed food. These are just two examples, there are many others.

Now I don’t for a moment doubt that to the mom, who is frustrated or inconvenienced by her child’s walking, talking or eating, that she genuinely feels stressed by these issues. She feels her life is made more complicated by them. However my heart is saddened because I feel that she is missing out on some happiness. From my perspective she has it easy, things could be a lot harder - and though I don’t want her to pity me, I do wish that she would be grateful for her child and what her child can do. It seems odd to me that she should be stressing about such small things. What a waste of happiness that she could have been living in.

I hope and pray that she would look at my journey with Matt and feel gratitude – that she would go home and celebrate her 9 month who is walking, or her non-stop-talking daughter, or her munch-as-much-as-you-can eater.

Just as I look at other moms lives, I wonder if some moms are looking at my life. What about my life and journey with Matt might someone else wish I was grateful for. Instead of me focussing on the struggles that Matt has, I can also benefit from a bit of perspective alteration:

I can be grateful that my child lives, as I remember those who have lost their children

I can be grateful that Matt can eat through is mouth, as I remember those with kids who have buttons and tubes.

I can be grateful that Matt can move, crawl, and walk – as I remember those kids who are in wheelchairs, and those kids can’t lift their heads.

I can be grateful that Matt is mostly healthy, as I remember those kids who are hospitalised and fighting chronic or terminal illnesses.

I can be grateful that Matt has both his parents, as I remember those kids with whom I work whose parents have died.

I can be grateful that Matt has access to excellent health and therapeutic resources, as I remember those kids (too many live in my city) whose parents struggle to even buy a loaf of bread.

I can be grateful that Matt is surrounded by a community of loving people, as I remember those kids who are mislabelled, misunderstood and suffer rejection, abuse and stigma.

Sunday, February 8, 2009

Friday, February 6, 2009

Cindy made a comment on my previous post saying that she missed the announcement that Matt had started walking. Well there has not been a big announcement because we are not really sure: is he or is he not walking? This has been a recurring question over the last few months. I have been at peace waiting for his walking, but have been looking forward to the big celebration when we can finally let off fireworks to celebrate that milestone. However recognising this milestone has been more tricky than one would think. For a number of months Matt has had the ability to walk but has not chosen to use it unassisted. He would walk 6 or 7 steps between Lloyd and myself when we are seated opposite each other on the floor, and when we initiate it. He would walk 8 to 9 steps from the one side of the room to another in order to get his favourite toy – but only if I encouraged him to do so and only as long as my two fingers were gently resting on his shoulders. And as we posted previously he would sit down immediately if there was any sign of praise or jubilation – the pressure of knowing he was being watched was just too much. So is that walking or not?? Slowly, very slowly he has started taking steps from the table to the couch, from the cupboard to the bed, from the bath to the toilet – independently and self initiated. Sometimes he would reach his destination and other times fall politely on his bottom. We weren’t convinced that that was a description of walking so although thrilled at the progression the fireworks were not left off. And bit by bit, day by day he has progressed, until now he can stand up and walk a good few meters in any direction he chooses – with a 90% success rate (i.e. no falling). He is still not confident to walk in places with which he is unfamiliar – he prefers to hold my hand. So is this now walking…or not quite yet? Do we let the fireworks off and announce to the universe that our little Sunshine is now walking? What do you think?

Here is a video (taken from Lloyd's cellphone so quality not the greatest) of Matt taking his steps:

Love

The Bible says that if we have not LOVE then we are nothing "If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing." 1 Corinthians 13: 1-7

nothing nothingWe are nothing without LOVE

It does not say if we learn to crawl long after most children crawl we are nothing It does not say if we struggle to learn how to speak we are nothingIt does not say if we grow up dependent on others we are nothingNo it says if we have not LOVE then we are nothing

This is helping us to free ourselves from worrying about Matt's development.

Rather, our goal is to let Matthew know he is LOVEDAnd to help him unlock the deep well of LOVE that God has placed in his heart...For then he will have LOVE and he will be something

Followers

RTS in South Africa

Connect more with others who have family members with RTS. Find out more about what resources there are in South Africa. Visit the RTS South Africa website:http://www.rts-southafrica.weebly.com/